In December 2023, John was diagnosed with MND, a time that John and his wife describe as ‘terrifying’.

By January the following year, John had become part of the MND NSW Advisor program, getting him on track to receive the support he needed, and providing information about motor neurone disease and how it may affect him and his family.

He said ‘knowing I can ring MND NSW is still very reassuring’.Motor neurone disease has changed John’s life, impacting even the little things he did around the house, or his small moments of enjoyment, like nurturing his garden or heading to the beach for a walk with his dogs.

“My life is very different now, the fatigue can be hard to deal with and I have good days and bad days,” John said.

“Simple things I used to do in the garden that I just can’t do anymore, even the menial tasks like mowing the lawn. I was a keen flower grower and would love getting my garden ready for spring/summer flowers. It’s not the same getting someone else to do it for you, even though I do appreciate it.”

“Walking the dogs on my local beach is no longer possible it was also part of my mental health as well as the exercise part of it, either alone or with my wife and children when they were down. The dogs are missing out.”

Due to his age at diagnosis, he was also on the cusp of missing out on receiving NDIS support. With help from his advisor Karen, he applied in February, however quickly learned that the NDIA were working through a significant backlog of claim requests and his call for assistance could take some time. 

Given his age and diagnosis, it was crucial for John to get the support he needed as he faced one of the biggest challenges of his life – motor neurone disease. 

MND NSW continued to advocate to the NDIA on the need for John to gain access to the NDIS and asked for his case to be escalated four times prior to him gaining access. His advisor was able to support him and his wife through the NDIS planning process.“We don’t know how we would have navigated the system without her,” John said. 

"Knowing I can ring MND NSW is still very reassuring."

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“I was concerned and very stressed with the time it took to get my NDIS, it did play up with my mental health and general wellbeing. The support from MND NSW was very appreciated.”   

With his NDIS plan in place and support from MND NSW, John has since been able to be connected to a neurologist, participate in trials and access a multidisciplinary team at an MND Clinic. He receives equipment as part of his NDIS plan through FlexEquip, ensuring he can access the assistive equipment that best suits his needs quickly and efficiently. 

John also has peace of mind for his NDIS plan by receiving Coordination of Support from MND NSW. Vicki helps him with his NDIS plan, ensuring he gets the support he is entitled to under his plan, and that his funding is used wisely and cost-effectively for him.

Given the unpredictability of MND symptoms for many people experiencing the devastating illness, John is also now connected to a senior planner that sits within a special NDIA team, established as a result of the advocacy of MND NSW and other state MND Associations.  

This team aims to provide quicker access to the Scheme and changes to NDIS plans in recognition of the responsiveness required to adequately support people living with MND who can experience rapid changes to their mobility, independence and quality of life as a result of the effects of their illness.

John has shared his story as part of the 2024 MND NSW Christmas Appeal. To help us be there for people living with MND like John, donate now at mndblue.org.au/xmas24.